Including the voice of children Towards patient-centered care

Patient-centered care (PCC) is characterized by the provision of care that respects and responds to individual patient preferences, needs and values, and ensures that patient’s wishes guide all clinical decisions. PCC places the patient, not the disease, at the center of health care and promotes a collaboration between patient, family, and clinicians to provide care that is tailored to the patient’s wishes and needs. Although the importance of PCC is recognized, its implementation is difficult because it requires a different mindset and changing roles of patients, parents, and clinicians. This thesis focused on scientific approaches and the development of tools to enhance PCC in children. Three aspects of PCC were examined; pediatric patient engagement, Patient Reported Outcome Measures (PROMs), and Patient Reported Experience Measures (PREMs).
The first part of the thesis provides a synopsis of the existing literature on pediatric patient engagement and discusses the development of a tool to enhance pediatric patient engagement. The second part of the thesis focuses on facilitators and barriers in the implementation of PROMs in clinical practice, using the KLIK PROM portal and the PROMIS measures as an example. The last part of the thesis provides an overview of the available PREMs in pediatrics.